A FAMILY from Pallasgreen went out for a five-kilometre walk at the weekend – because they could and to raise money for supports for hundreds of people who can’t.
As the number of people with motor neurone disease (MND) in Ireland rises to 468, the Irish Motor Neurone Disease Association (IMNDA) is asking people to walk 5km as part of its ‘Walk While You Can’ challenge to raise vital funds and awareness for those living with the disease.
Amanda Lillis explains that her family are taking part in the name of her husband Tony Ryan, who was given a diagnosis that “changed our world forever”.
“MND is a relentless disease, and one of the hardest things about it is the uncertainty. There’s no way to know how long someone has or which muscles will deteriorate next,” Amanda says.
“Tony’s MND started in his arms, slowly wasting the muscle. Now, even simple tasks like dressing, washing, or feeding himself have become a challenge. I’ve taken on the role of caregiver, something I never thought would have happened at 49 years of age.”
MND is a neurological condition that affects the nerves controlling muscles, leading to progressive weakness and loss of movement. It strips away the ability to walk, talk, and even breathe, all while the mind remains fully aware. There’s no cure, and every case progresses differently, leaving families like Amanda’s facing an uncertain future.
“What’s particularly difficult, and what I want people to understand, is that because Tony looks fine, many don’t realise the battle he’s fighting,” Amanda shared.
“Just recently, we were shopping for clothes and I was told I couldn’t accompany him into the fitting room. I had to explain to staff that Tony couldn’t dress himself, and the embarrassment and frustration of that moment really hit us.
“If his arms were in a cast, people would understand immediately. But with MND, the struggle isn’t visible, and that adds to the isolation.”
The strong Limerick woman says that the help that she, Tony, and their family have gotten from the IMNDA has been “a lifeline for us”.
“Tony was hesitant to join the IMNDA at first, probably because accepting their support felt like accepting the reality of the disease. But when we heard about the Walk While You Can event, he agreed to register so we could raise money for them.”
Amanda says her husband “felt a sense of embarrassment – maybe even shame, about needing so much help and support. But over time, he’s shown even more strength by allowing himself to rely on others when he needs to.”
“His courage in the face of vulnerability is just another testament to his unbreakable spirit.”
To take part in the IMNDA’s Walk While You Can’ challenge, or do make a donation, visit imnda.ie.
